Thursday, June 27, 2013

A Break

After my post from yesterday I am sure you won't at all be surprised to hear that I've decided to go take a break from my blogging for a few days of girl time with little.

In-commun-i-cado. Incommunicado. That's me. :o)





Wednesday, June 26, 2013

Stinky Day

I woke up knowing that yesterday was going to be a long stinky day. And now, I am writing this with a hurting hear and arthritic exhausted body. Wow, is this the perfect example of stress majorly effecting my auto immune disease symptoms.

L was scheduled to have some dental surgery today. We've known about it for months. As the date got closer my husband and I fervently tried to avoid the subject while it seemed like that was all our girly wanted to talk about. Having anxiety we knew that L was going to have some problems with being at the hospital, the pre-op, etc, beyond what most kids would experience with the situation.

The positives to the visit are that The Hershey Medical Center has just finished an entire enormous wing dedicated entirely to a children's hospital. It's amazing. L fell in love with a painting that encompassed an entire wall of a hallway on the first floor. It had
forest scenes painted on it, and scattered through out were trees with knotholes in them. Each knothole had a cut out, for the kids to peek into, and they could control the little video inside the knothole with a video wheel. One had a picture of a fawn in a meadow, another a butterfly and flower blooming.
Interspersed within that were giant slanted poles that glowed according to how many times the buttons on it was pushed. L could have spent hours playing there. Unfortunately, we weren't able to let her since we were on a schedule. The staff quickly made up for that by supplying stickers, crayons, a coloring book, a stuffed bear pillow volunteers had colored, stickers, chapstick, a special pillow case, scrubs with baby tigers running across them, a stuffed animal, and did I mention stickers? The staff were amazingly acceptant with L and her holdups about being there.

My hubbster and I spent the morning (from 8:00 til 12:00) attempting to keep L relaxed, to varying degrees of success. I was squished in a chair or sprawled across an uncomfortable hospital bed with my girly laying on me for most of that time. Once it came time for her to be rolled away she became inconsolable and I found myself packed into a set of disposable scrubs and rolled down the hallway to surgery with L. Having me with her, in the OR, didn't change anything so we ended up having to "help" her take in the happy gas to put her to sleep. I don't even have words to express the horror I felt having to help hold her down while she cried and begged me to help her, knowing it was best for her. It makes me feel a little sick to my stomach just thinking about it now and a lot like I want to cry a river of tears.

L came out of anesthesia wonderfully. She made her post-op nurse fall in love with her and the mother, in the curtained room beside her, exclaim that she thought she was "so cute that it hurt". Apparently, before we came back she kept declaring, "Oh! It's over already!?!". She's completely recovered now and happily slurping up a Rita's Italian Ice.

I, on the other hand, am physically hurting and emotionally fragile.



Monday, June 24, 2013

Coloring Pages

I found a great website for free coloring pages I wanted to share with you. You can check it out here. My girly had me print off a zillion of them!



Saturday, June 22, 2013

Cookies

 I had four small tubs of play dough cookie in the freezer that was just


itching to be used. So L and I cracked it open to make some cookies.

The dough worked through my daughter's hands just like she was actually playing with play dough. So it was fun for me at first but by the end I had to let my girly finish off the dough because my hands really started hurting. She didn't have a problem with that!

And wasn't I surprised when I bit into my cookie and found this...




Friday, June 21, 2013

Something Positive

As I promised you.... Here is something positive, today, after yesterday's pity party. Or at the very least it's chuckle worthy and down right CUTE. Our Pomeranian Halle....





Thursday, June 20, 2013

Surprise!

Something that's high on my list of "Things I have previously taken for granted"?  My right pointer finger and all the joints that are included in that.

My pointer finger joints are inflamed, hot, and sooo painful. I never realized, however, just how much I actually use that finger. Until I couldn't button my pants, open a jar (or anything really), color, write, type normally on the computer (I am "hunting and pecking"). I can't do anything that I would like to be doing thanks to this finger. Cleaning? Not even happening. So many things fall to my husband already, with my health, it's just eating away at me that so much more is falling on him at the moment because of my stupid finger!

I'm more or less taking Aleve and attempting to use the finger as little as possible until I see my rhuemy, at my next appointment, in the middle of July.

Sigh. Ya ever feel like you just can't keep up? Just about the time I think I have things figured out my body decides to throw something else at me.

Ok, I'm done whining now, I'm off to do my grocery shopping with my six year old. Exercise in futility anyone? Ha ha ha



Wednesday, June 19, 2013

Books

The reader and artist is me is thrilled that there is a wall of books like this in a store. The ocd in me wants to take the wall down and then put them all back so all the titles face the same way!

This gave me a chuckle today!



Tuesday, June 18, 2013

Secret

Shhhh! I have a secret that I am about to share with you.

The secret to me taking an active part in my whirlwind day with my little hummingbird and then barely having the energy to drag myself into bed at the end of the evening managing my day....

Ready for it?

You sure? Because this is so simple it's stupid. Okay...

"Quiet Time". Quiet. Time. My favorite two words in the middle of my day. I know, I know! That sounds terrible! However, when your sassy lovely six year old has the attention span of a puppy and you are working on a tank of gas half full at the start of the day, you learn to how appreciate the simple things.

Assuming we aren't out wandering somewhere we just know that when we're at home we have quiet time. What does that mean in our house? It means L gets sent to her room from one-ish til three-ish. (There's a little give and take with the times depending on what crafts or baking we might be in the middle of.) Yes, two hours every day. Oh, don't feel sorry for her. The girl has toys my six year old self wouldn't have even dreamed of stashed in every nook and cranny of that room of hers. And me? I crash. Literally, crash on my bed. I read if I am good energy-wise. On the low energy days or the days that my arthritis is giving me serious issues, I nap, with a monitor on to listen into her "quiet time" antics. Grant it, I don't nap for very long before L is prancing into my room with her second outfit change of the day consisting of three ill fitting shirts layered on top of one another newest outfit design on or her "splendidly drawn" picture. But even twenty minutes is good.

And that helps me sooooo much to re-energize for whatever comes our way in the afternoon and evening.



Monday, June 17, 2013

Funny... Not!

A funny conversation between my husband and I following a smart comment he made to me...

Me: Jokingly I said... "I would hit you but I can't physically do that right now."
T: Throwing his hands up in the air... "I'm right here."
Me: Laughingly I said..."Thanks for the sympathy Hun."
T: Whispered to the dog... "Halle, go lick Mommy now. She can't move her arm!"



Saturday, June 15, 2013

Lesson

My desperation to make a day that was "the boring-est time in the entire-est world ever" turned into an easy lesson in air pressure and vacuum properties with an egg and empty soda bottle. Saved. My. Day! Not exaggerating at all.

Here's a video we made to show you how fun it was.





 I would recommend having your kiddos squeezing the bottle if you have arthritis in
your hands at all. They will have a blast, even if you don't have arthritis. This, seriously, gave me an hour's break when I combined this neat little trick with various kitchen items found in our house. We added sugar and food coloring to see what would happen.


** I also want to add to be sure that you keep your kiddos from eating the raw egg and wash their hands thoroughly once they are done playing with the eggs. Even though the risk is small there is a chance that you could be dealing with salmonella without making sure you clean up everything (including your kiddos) afterwards.



Friday, June 14, 2013

Sjogren's Flair


Flair: is a natural talent or distinctive and stylish elegance.

Flare: to blaze with a sudden burst of flame (often followed by the word up)

I'd like to use the first version of the word "flair" from now on instead of using the second "flare" version I have been using. It feels more positive to me. Because let's be honest we Sjoggies don't just do illnesses in a "normal" way. We do it with a "natural talent and with a distinctive stylish elegance". :o)

He he he he




Thursday, June 13, 2013

Busy Baby Resting Mommy Summer List

I sat down and came up with a list of things we'll be doing this summer, in three different categories, to stay busy and I thought I would share them with you...

SUMMER GO

Park passport (Write down all the local parks and stamp them off as we visit them)
Take Opa slushies
Go to local lake
Go to lunch with Nana
Bowling (Free bowling programs across the US http://www.kidsbowlfree.com/)
Fishing
Hershey Park
Regal Movies ($1 movies at participating theaters playing kids movies)
Hershey Farmers Market (Thursday afternoon)
State museum
Library
Clean up litter
Walk the trail
Bike/Scooter the trails
Bass pro summer camps
Zoo
Panning for rocks


SUMMER ART

Bleach t-shirts
Corn painting (with corn cobs)
Color Wheel Painting
Fly Swatter Painting
Crayon Melting on a warm plate
Painting on toys
Cross stitch
Chalk on sidewalk and parking spot
Coloring pages-printed


SUMMER MISC.

Write summer journal
Bake
Dig in the dirt
Shaving Cream and beans
Egg Shell Exploration
Ocean Sensory Bin (With gravel, fake fish, etc.)
Baked Cotton Balls
Pretend cooking with real ingredients
Treasure ice cubes (freeze toys inside ice cubes)
Toilet paper roll trail (unravel tp and follow through house)
Cooked Spaghetti sensory
Guess that smell game
Popcorn sensory bucket
Rootbeer/Coke float
Make pretzels
Fondu dinner
Making cupcakes with cupcake maker







Wednesday, June 12, 2013

Sea Lions


My husband showed me this video and it just melted my heart and I had to share!


Tuesday, June 11, 2013

Rainy Days and Mondays

 The forecast was calling for rain all day yesterday. And at eight o'clock my girly was already asking what we were doing for the day. So I decided to wrap her up in a poncho, shove her in her rain boots, I grabbed my golf-umbrella and headed for our favorite walking trail right by our house.

We had so much fun walking in, for the first time, in the rain. We
had so much time that when I looked at my watch, at the car when we were leaving, I realized that we had spent almost an hour and a half just splashing around in the rain on the boardwalks, watching the birds frolic in the puddles, and exploring how the rain drops looks on different leaves and trees.

Now that is some high quality fun.... for free! Well, almost, I'm on the couch tonight. But it was well worth it!!



Monday, June 10, 2013

Long Summer

It's going to be a long summer.

I've been having a rough time with my Sjogren's recently. No matter how much I am on my feet, during the day, I end up swollen by the evening. Swollen stiff knees, toes, and hands. The joints of my pointer finger get so inflamed, red, and hot that I can't even bend it by the time I go to sleep. Every morning I wake up, a riot of pain running through me. My muscles and joints cause me discomfort until my Aleve kicks in, sometimes. Sometimes, the Aleve kicks in. And scattered around all of this my fatigue plays peek a boo through out my day. Some days the fatigue will never show up. The next day I could be flying through my day and suddenly get hit with a wall of fatigue that has no forseable way to get through it.

I am guessing I am working my way a flare right now. Ordinarily a flare can run anywhere from annoying to downright landing me flat on my back on the couch. I'm an all day couch mama those days. Added to this flare is the fact that it's now summer vacation.

"School's out for the summer...."

Yeah, okay, forget about Alice Cooper.

Any....way..... I now have a six year old thrown into my flare. Wait! Sorry, I'm being reminded that she is now six years and eleven months old. So, I now have a six years and eleven months old child playing amidst the craziness of my Sjogren's.

Que Flight of the Bumblebee... and.... now....



My girly is a perfect human replica of a hummingbird. She's bright flashy beauty that flits from thing to thing in constant motion. I somehow have to find a way to stimulate and challenge her mind, help her get out her love of running and climbing and all around normal kid behavior for physical activity, and somehow manage to get us out of the house several times a week, while working around my flaring mess of a body.

"It's going to be a long hot summer...." Yeah I just quoted Keith Urban too.

Okay, enough of this craziness! I'm off to peruse Pinterest to come up with some ideas for summer. I am contemplating making a Pinterest page for Sjoggie StAHMer for all my fellow chronically ill moms who will be trying to entertain their kiddos all summer long. I am also thinking I need to start coming up with some more Busy Baby Resting Mommy blog posts for my own household and then report the ideas to you!




Wednesday, June 5, 2013

Mmmm

I made asparagus alfredo for dinner last night. All from scratch (minus the store bought noodles.). The asparagus came from our csa box.

The down side? L didn't eat dinner. The up side? It was because she was too busy sneaking fruits and veggies from our csa box while I was trying to clean and prep it all for the coming week. She scarfed down strawberries like nobody's business and gave me a "What, I didn't do anything?" look while deep red berry juice dripped down her chin. I consider that a win!

PS- I can't wait to dig into those strawberries myself!